Well, off to GP'a tomorrow to extend my sick certificate as still dont feel like I have any energy to go back to work yet. Gonna see a different GP tomorrow as, no disrespect, but my GP is pretty useless, another doc in the surgery is quite good, so will see her.

My own GP put me on a steroid course for 1 week two weeks ago and it did help loads with the pain, my rheumy is happy for me to go on long term steroids, a low dose, to try and keep the pain at bay, but my own GP is against it because of the risk of osteoperosis. Pain is slowly started coming back in my hands at mo, and a little in my right leg. Dont know if I went on a calcium supplement it would help with the risk of bone density.

Work will be furious if I dont go back on Thursday but only been off 2 weeks this time so far and my job is really hectic and busy ( I am a nurse) and honestly dont think I could cope with work, still napping during the day as soooo tired and aches waking me at night.

20 Replies

hi Sue, ive been on steroids for 22yrs non stop, to be honest its the only medication thats ever eased my pain, my bones are fine apart from the arthritis, your rhuematologist specialises in Lupus so they should know what could help you, your GP does not, i would take the advice of your rhuematologist, a lot of people manage on long term low dose steroids without complications, does your employer know that you have Lupus & if so they have to allow for your time off due to illness because long term medical conditions are classified as a disability, maybe you should get advice from labour relations about your work & where u stand, you have enough to worry about without the stress of work related anxiety...hope you get some relief soon.xx

Thanks for that, will see what other GP says tomorrow, Believe it or not I work for the NHS and I think they have got to be the non=understanding employers around, In a way I can understand it cos I am not terribly reliable and they are short staffed but I am not like this on purpose.,

First and foremost,I hope you get an understanding GP,very important.I know steroids are recommended to people but,I am very,very wary.It is bad enough that I have decided to take the Hydroxychloroquine.I am sorry not to be very positive but steroids really frighten me but,what works for one does'nt necessarily work for the other so,it's your choice and hopefully you will find a GP who will be able to clarify everything for you.Good luck.

I know, I worry about the side effects of steroids too, but I know they work for me when I have the higher short term doses, and I get very down when everything hurts so much, wish there was a magic wand instead.

i know we can worry about the side affects on steriods as i worrid to ..but since i started on a low dose ( 1omg) i have felt the benifits of them my pain and skin rash has carmed down i also take ( 400mg) of hydroxychloroquine when i got over the sickness feeling i have felt better on them also ..the only thing is to try to do what is best for you ...and if you find the magic wand then please share best wishes to all x

I am on the same dose of hydroxy as you, think I will push to try the steroids tomorrow, got to do something, as at the moment cant see me going back to work at all.

5 years agoHidden

Hithere Sue,,hey first of all i know exactly how you feel hun!!Iam now on week 7 of sick from work,,my job is also very physical,,i clean in the old historic part of a larg hotel,,and im expected to be constantly on the go.A few months back i just knew i could not carry on without making myself really ill so hence,,went sick.

Ireally hope the next gp you see is more understanding and listens to your needs and concerns,,Ive found it helps to write how i feel down to try and make sure i dont forget,,my short term memory is getting worse,I have d l e..Fybro,connective tissue disease and livedoreticularis(skin problem which is separate to d l e!My rhuemy has put me on Tramadol andamtriptolene for pain recently so i see how i go,,i have had 400mg of hydroxy for 3months now and no this has helped my skin but done nothing for me for pain ,,we are all different,

You just make sure you tell your gp you are not able to carry out your duties safley at work,,fatigue,,pain,,how can you work with all this.Nobody really understands like another lupus sufferer!Wishing you all the best pet.x

Sue I work for NHS Fife and up until now I have luckiy always had a very understanding manager, but with cutbacks my manager is leaving, so I will probably end up in your situation very soon It's pot luck really and dependent on the individual managing you, which is not good! As for the steriods, I would suggest that you get your rheumy to do a letter to your gp, outlining what he thinks is the best course of action and that way your gp cannot and will not challenge it. You can propably tell that this is something I have had to do in the past and to be honest, my gp then said "well your consultant specialises in this". OMG you don't say lol! Why don't you hold an awareness stand at your local hospital and that will help educate your colleagues, managers, managers managers and gps if they are in the same building. Give it a try, it has helped me. I got my friend to help out and we also raised money in the process (lupus uk covered the insurance - speak to them about that). Good luck with work and don't go back until you feel well enough to do so and definitely not when your work pressurizes you to do so. The NHS should be ashamed - how can you care for others when you can;t understand and care for your own!! Lx

Hi i have SLE for 11years and been sick on and off from work. Dont worry about the sicknote for work(i am a nurse) i have been off work this time round for one and half years and they had to keep my job open for me as long as i kept my sicknotes up to date, my GP was very understanding about my health, i have just gone back to work now in the last four weeks ago and slow pace back on reduce hours until i feel up to full time, they can not sack me as you are covered under the disability act read up on that so dont worry yourself to much, you have the illness to worry about, i am going to work part time 3 days aweek as i am on DLA as well. I have not only been off sick once from work but many times and each time from 6 months or 1 year, be strong dont let them bully you at work. Good luck.

PS apply for DLA because you will get it it just a long form to fill in but keep at it and get advise from you GP about it as it will make your life alot easyer with that little extra money coming in.

DON'T GIVE UP! get help eg from your local Centre for Independent Living [if there is one] or u might get useful info from the Disability Alliance. I hadn't heard of CIL- but a friend put me onto them- they filled in all the forms for me- my apllic was rejected, they then got me a lawyer to appeal- the appeal then went to tribunal & in the end they rang up on the day of the tribunal & the judge said they had found in my favour & i didn't actually have 2 turn up in court!! we were all gob-smacked! it took nearly 1 year from beginning 2 end but it was worth it- they back dated my DLA for 12 months- also i now qualify 4 a free bus pass! likewise with Employment Support Allow. [Incapacity Benefit] the medical assessor said i'd be back to work in a few weeks [i'd already been off a year]- i appealed- was rejected- appealed again- was rejected- kept on and it was supposed to go to tribunal and they then wrote to say they had reviewed my case and found in my favour- sorry 2 go on- but it really is worth hanging on- get as much help as u can- even the guy on the end of the phone @ dep for work+pensions said 'they are rejecting everyone now' and explained how to appeal- it is definitely their strategy to reject everyone in the hope that you give up so they'll save money! GOOD LUCK!!

Thanks for that, just got back from GP, what a difference a different GP makes, completely on my wavelength, understanding etc. Signed me off for 4 more weeks, agrees with the steroids, plus calcichew. Organising a base line bone scan, making another appt with hosp for Lupus nurse in about a month. Wants to see me in 3 weeks irrespective of how I am feeling.

Its interesting what you said about not being able to sack me, that is the impression they keep giving me (well hr do,), if I dont go back quickly I may lose my job. Have decided to get the union (RCN) to come to HR reviews etc. so I cannot be bullied.

Thats great you take union rep to next meeting because that helped me alot as they will fight for you and that way your manager can not bully you in any way. By the way how long have you been working for the trust you work for? I

Whenever you worried about things just talk to your Lupus nurse they are very helpful. Good luck

You have to think of yourself and not others for a change! Being a nurse is chaotic and at the moment you're more important! I'm sure when this flare is over or you feel a bit better work will still be waiting for you. Take care. x

hi sue, i used to be a nurse and had to leave due to sever memory stuff with lupus i wasnt safe to work.

i would make sure when you look to go back to work you do a phase return to work, access to work do work place assessment to see if you need any specialist equipment to help you do you job, reduce pain. the employer has legal responibilities to supplie this.

also think about being redeplyed to a less demanging area.

ive been on steroids for years and they have used immunosurpressants to reduce the dose a biophosphinate has done wonders for my bones hope it goes well with work.